I went to a new massage therapist today and she said that she usually doesn't do deep tissue massage of people with lupus. I have never heard that before. She said that it can cause a flare. I have been getting deep tissue for years now for my fibro. Has anyone ever heard of this? Take Care,

Yes, deep massage can be trouble for some lupus patients...mostly because some massage therapists aren't good at feeling the muscle 'rebound' and can easily go too deep too fast without warming up the muscle first...thus causing bruising and/or inflammation. Also, some massage therapists are more knowledgeable than others about knowing what their actions can do for (or against) certain diseases. And some are just more tentative and cautious than others.

I tread very very carefully when seeing a new massage therapist...I basically test out the effects of a 'relaxing' massage and gradually let them do more over time if the individuals work fits well with my body. Some just don't read bodies very well and I don't let them take over!!!

If deep work has been working for you without issues with a particular massage practitioner, I'd stay with that person if at all possible. The really good ones like that can be hard to locate sometimes.

my old MT moved to a chiropractors office about 30 miles from me. I wish I could stay with her. The new one today seemed to be trying to be cautious with me. I will see how I feel in the next few days. Thanks for the information. :)Take Care,

Interesting. I've been seeing the same massage therapist for over 3 years. Over time she has learned how much is too much for me (there were a few painful episodes while we were sorting this out) and I decided that generally an hour is too long for me - and we stick with 30 min. sessions. I began seeing her for a bad back (herniated disc) and fibro. I've gotten a lot of help from her, but for the last couple mos. it seems I flare after seeing her. We talked about this on Monday - she used very light touch - and I'm waiting to see what tomorrow brings. But I had never thought about Lupus being something that massage could flare up.....I've been blaming the fibro - hmmmm....

I have polymyositis (an inflammatory muscle disease) in addition to lupus and have had many deep massage treatments with no negative problems. We are all different but that has been my experience. I had an extreme case of PM and lost 40 lbs of muscle cells. Recovery has been an uphill battle for over 3 years and I still struggle with the contraction of almost every soft connective tissue in my body. Stretching and massages have been the remedies.

Good to hear your viewpoint, Bill. I hope others will post. I do think fibro adds another element, especially with myofascial issues. The massage had been working pretty well for me - but there are so many variables at present, I'm having trouble figuring out what is triggering what. I know my muscles are weak right now and need stretching and exercise - but most everything I try seems like too much and I feel as though every step forward results in 2 steps back. Very frustrating.

I was having a massage therapist come to my house once or twice a week, and while her massages felt good, they weren't the best I've ever had. I finally discontined them because she was leaving many dark bruises on my body. As is true with most professions, massage therapists can be good or bad whether or not we have a chronic illness or are perfectly healthy. You're fortunate, Lynnwood, to have found a good one.SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

Do not believe that mild exercise or stretching would trigger a flare. Sounds like your disease is still very active and if you were on effective controlling meds you should not get those types of flares. My cpk number was 13000 and I started PT...what little I could do lying on my back in bed. I really don't think that mild exercise (range of motion, walking, light weights, stretching, isometrics) will cause a flare. Something else is going on.

Some of us are very fragile, and walking, just to the mailbox, is a HUGE deal. So I believe some of these very, very ill people would not necessarily be well-served by the exercises you mention, Bill. That doesn't preclude trying a bit from time to time to see what the results are, but we can only talk of our own experiance here, not prescribe for anyone else.

However, we were not talking about exercise, we were talking about deep tissue massage. I have seen well-documented medical reports from both sides -- that it may be counter-indicated for lupus, that it may be helpful to lupus. I personally have one massage therapist who I would trust with deep tissue no matter what, and others who try to go deep without working their way into the muscle first, that I would not visit at all since lupus - no way, no how.

I dated 2 massage therapists for a total of about 6 years, and read the information they'd had in the house -- some of the literature is very cautious about massage for immune-compromised individuals. It's one of the many aspects of our illnesses that have no well-defined, permanent answer that works for everyone.

I would advise that if you've never had deep-tissue massage, that you find a really good, well-qualified person, and work up to deep massage over a series of appointments. Basically, check it out slowly and see what works for you. Also, if you are very ill with lots of meds -- maybe see if your doctor has any reservations about it first!

PS. I was in Taos, NM last week, and was able to enjoy a Japanese-style hot bath (104 degrees). After the initial shock, it felt really good and loosened up muscles I didn't even know I had. I was a snail (boneless & soft) the rest of the day, then extra stiff the 2 days after that... then I started feeling better than I'd felt in several weeks, and the 'feeling better' part lasted about 10 days.

I wish "the baths" were available in the southeast - I'd love to experiment and see how a regular regime might help with the stiff/sore bits of this illness!

I do not know the answer to the massage question. On exercise I know a little. I doubt that anyone on this forum was as weak as I was in 2005...completely disabled and quadriplegic with a feeding tube and more complications than I can list. A bag of bones who could only lie on his back. Just opening my eyelids was a major task. If the criteria for physical therapy was that it could not tire me, then I would still be a quadriplegic today. I was exhausted to a cellular level every moment no matter what I did. The most simple physical task would exhaust me. However I opted to try and today I can ski, play golf, etc. Recovery was the most emotionally difficult, exhausting and painful thing I have and hopefully will ever do. And after 40 months I am still working on improving my strength and physical condition.

There are some people whose disabilities prevent them from therapy but most can do it. There are some who have minor disabilities but a chronic rather than severe disease. It is not easy for anyone to rehabilitate. I have worked as a volunteer in a rehab hospital for 2 years (to pay back what they did for me and try to help others recover) and have seen many who are worse than I was. Including some with lupus, myositis, ms, and guillan barre. So difficult but they make the effort and most see progress in time.

I can't give specific medical advice for any individual ( I am not a doctor or therapist) but I can hold myself up as an example of someone who came out of a very deep hole from which no one, not even the doctors and therapists, thought I would emerge. There are studies that show that mild exercise actually reverses inflammatory processes. A friend of mine passed away in January when his illness (dermatomyositis) could not be brought under control. The physiatrists decided after several months of therapy to stop. He was one of the few patients that I have seen who had to stop for reasons other than insurance. Unfortunately, he passed away from complications a month later. But he tried.

There is so much unknown about our diseases and the aspect of recovery and rehabilitation is largely neglected in my opinion. My personal experiece is offered as a counter point to those who believe or are advised there is not much that can be done. I am glad I did not "accept" my disability without a fight.

I think what is coming from all of this is that everyone is individual and it depends on the person what they can handle in regards to deep tissue massage. I am always sore for a couple days, but after that I feel better for about 2 weeks. As for exercise that is very individual also. I don't think anyone can say what is too much or not enough for someone else. I have learned what I can do and I know if I push it farther I will end up paying for it. I think we need to listen to our bodies. Thanks everyone for your responses. I want to try that Japanese bath too....:)Take Care,

I have several issues and I have to say I do deep tissue work on my muscles. My MT sometimes questions the DX of Fibro as she can go really deep on some areas of my body.

I'm sorry that you regular MT has moved away and you need a new one. I'd suggest you start out slow and see how things go. When getting a massage it bring all the blood to the area that they are working on and I sometimes feel off after having a lot of deep tissue work done. Make sure you drink plenty of water to flush the toxins out of your system.

I have gone for deep tissue for years . . . works wonders for me, but I agree with barb about the water thing - if I do not drink plenty of water both before and after, I feel like I got run over by a bus for days afterwards.

If you pursue the massage route, I also agree with Lynn that you have to find someone who is well qualified and work your way into the deep tissue massages. I learned that by coming home bruised multiple times. I have also been to therapists who do not "listen" to what my muscles are saying to them and have ended up not only with bruised muscles, but bruised pressure points as well.

I have a good massage therapist who I have seen for the last 8 years . . . usually when I see him it is for a minimum of 90 minutes and I have gone for as long as 3 hours. He does a good job warming up the muscles and bringing them back down - kinda like a warm up and a cool down after a workout. I can't do anything at all after a session except go home and nap because I am so wiped out, but for me it definitely helps my situation.

All I can hope is that he never decides to quit because I am not sure that I could handle having to look for another therapist!AlienWife

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

Bill - I think something else is going on, too. But none of my labs other than my ANA has been significantly abnormal to date. That is, other than when I'm in a severe flare w/ fever. Then my white cells are low, CRP is through the roof, and liver enzymes are elevated. Everything returns to normal within about a month - except for the ANA.

I used to work out at a fitness center 3 x weekly, doing cardio and weights. I usually walked as well, 2 miles most nights. I felt the exercise helped the fibro immensely. A herniated disc (twice) in 2004 put a huge crimp in that routine, and I've not been able to return to it. The ANA turned on sometime between 2005 and 2007. My rheumie insists there is something autoimmune going on - but can't decide which connective tissue disease has landed. I've also been to an infectious disease doc, who determined that my immune system is hyperactive, also indicative of an autoimmune dysfunction.

I feel like I'm in an ongoing flare - so maybe it isn't right to say that a little bit of exercise/stretching triggers a flare - it's more like it just worsens and deepens the level of flare back to a point of fatigue and pain and malaise and inactivity. I think this is the difference that Lynwood was referring to, between weakness vs. illness/disease/easy to flare....